Are family-centred principles, functional goal setting and transition planning evident in therapy services for children with cerebral palsy?

BACKGROUND: Family-centred service, functional goal setting and co-ordination of a child's move between programmes are important concepts of rehabilitation services for children with cerebral palsy identified in the literature. We examined whether these three concepts could be objectively identified in programmes providing services to children with cerebral palsy in Alberta, Canada. METHODS: Programme managers (n= 37) and occupational and physical therapists (n= 54) representing 59 programmes participated in individual 1-h semi-structured interviews. Thirty-nine parents participated in eleven focus groups or two individual interviews. Evidence of family-centred values in mission statements and advisory boards was evaluated. Therapists were asked to identify three concepts of family-centred service and to complete the Measures of Process of Care for Service Providers. Therapists also identified therapy goals for children based on clinical case scenarios. The goals were coded using the components of the International Classification of Functioning Disability and Health. Programme managers and therapists discussed the processes in their programmes for goal setting and for preparing children and their families for their transition to other programmes. Parents reflected on their experiences with their child's rehabilitation related to family-centredness, goal setting and co-ordination between programmes. RESULTS: All respondents expressed commitment to the three concepts, but objective indicators of family-centred processes were lacking in many programmes. In most programmes, the processes to implement the three concepts were informal rather than standardized. Both families and therapists reported limited access to general information regarding community supports. CONCLUSION: Lack of formal processes for delivery of family-centred service, goal-setting and co-ordination between children's programmes may result in inequitable opportunities for families to participate in their children's rehabilitation despite attending the same programme. Standardized programme processes and policies may provide a starting point to ensure that all families have equitable opportunities to participate in their child's rehabilitation programme.

Social and language skills in adolescent boys with Asperger syndrome.

Twenty-one adolescent boys with Asperger syndrome and 21 boys matched on age and an estimate of IQ were assessed using standardized measures of social perception (Child and Adolescent Social Perception Measure, CASP), social skills (parent, teacher, and student forms of the Social Skills Rating System, SSRS), number of close friends and frequency of contact (Child Behavior Checklist) and expressive and receptive language (Clinical Evaluation of Language Fundamentals-Revised). There were significant differences between groups on CASP scores, SSRS scores, number of friends, frequency of contact and social competence. There was also a significant difference on receptive language. The clinically and statistically significant differences between the groups on the measures of social skills help us understand the nature of the social deficits in Asperger syndrome and suggest the need to focus on specific deficits. These findings are discussed in relation to diagnostic criteria and intervention.

Are families with adolescents and young adults with cerebral palsy the same as other families?

This study compared adolescents with cerebral palsy (CP) and their families to adolescents without physical disabilities and their families as the child enters and leaves adolescence (age ranges 13 to 15 years and 19 to 23 years). Families of 90 individuals with CP (42 females, 48 males) and 75 individuals without physical disabilities (34 females, 41 males) participated. They completed the Family Assessment Device, Life Situation Survey, Multidimensional Scale of Perceived Social Support, and Future Questionnaire. There were few differences in family functioning, life satisfaction, or perceived social support between the groups. Expectations of young adults with CP and parents of both adolescents and young adults regarding future independence and success were lower than the expectations of the control group. While the group results emphasize similarities between families during the two stages of adolescence, individual families and individual family members report specific challenges.

Scores on the Nursing Child Assessment Teaching Scale for father--toddler dyads.

Fathers of 49 Canadian children (ages 13 to 24 months) were observed interacting with their child at home using the Nursing Child Assessment Teaching Scale (NCATS). Consensus ratings from two observers were used in the analysis. Compared with the NCATS reference data for 164 mothers of similar ethnicity and marital status with similar-aged children, mothers were more responsive than fathers in the interactions. Mothers had significantly higher scores on the overall Total NCATS score, on the Total Parent score, and on the Parent Contingency score than the fathers. In contrast, children were more responsive to fathers than mothers. Children interacting with their fathers had significantly higher Total Child scores and higher Child Contingency scores than those interacting with their mothers. Maternal and paternal age and education were not correlated to scores on the NCATS. Implications for practitioners are discussed and the results are compared to a study of mothers and fathers interacting with children ages 2 to 12 months old in which the observations were measured by the NCATS. Results suggest that NCATS cutoff scores used to identify mothers in need of intervention should be used with caution for father--toddler interactions.

Fathers' scores on the Nursing Child Assessment Teaching Scale: are they different from those of mothers?

Fathers of 103 Canadian infants (ages 2 to 12 months) were observed interacting with their child using the Nursing Child Assessment Teaching Scale (NCATS). Compared with the NCATS reference data for 387 mothers of similar-aged infants with similar marital status and ethnic background, there was no significant difference on the overall total score. However, fathers had significantly lower scores than mothers on the total parent score. Infants interacting with the fathers had significantly higher total child scores than those interacting with the mothers. Although mothers and fathers were equally sensitive to their infant's cues, fathers were less contingent in interaction with their infants. Implications for practitioners are discussed.

Parent-child interactions and development of toddlers born preterm.

Fathers and mothers of 49 healthy preterm and 54 full-term infants were observed interacting with their child at 3 and 12 months using the Nursing Child Assessment Teaching Scale. Each parent completed the Parenting Stress Index at both times. At 18 months adjusted age, the children were assessed using the Bayley Scales of Infant Development, Sequenced Inventory of Communication Development-Revised, and MacArthur Communicative Development Inventory. Preterm children scored significantly lower on the Bayley Mental scale and on the number of words produced. Early parent-child interactions contributed to the child's development. Mother's interactions with the child, child gender, and family socioeconomic status predicted 17% of the variance in the Bayley Mental score. Mother's and father's interactions with the child, child gender, and the child's behavior with his or her mother predicted 22% of the variance in receptive communication skills.

Impact of marital quality and parent-infant interaction on preschool behavior problems.

This study examined the relationships between parent interactions with healthy term and preterm infants at 12 months of age, marital quality, family socioeconomic status, and preschool behavior problems. Eighty mothers and 74 fathers were observed in the home during an interaction with their child (Nursing Child Assessment Teaching Scale), and this group of parents completed the Dyadic Adjustment Scale questionnaire (marital quality) 12 months after the child was discharged from the hospital. Each parent completed the Eyberg Child Behavior Inventory when their child was four years of age. The parent and infant interaction scores were not predictive of later child behavior problems. Maternal perceptions of marital quality at 12 months predicted the frequency (Eyberg Intensity score) and impact (Eyberg Problem score) of the child's problematic behaviors reported by mothers. Marital quality and family socioeconomic status predicted the impact of behavior problems for fathers. There were no significant differences between preterm and term children or between boys and girls in the frequency or impact of problematic behaviors. Mothers reported a significantly greater frequency of behavior problems than fathers of the same children. The implications of these findings for nurses who work with families and young children are discussed.

Past childhood experiences and current parent-infant interactions.

To examine the relationships between adults' childhood experiences in their family of origin, current level of marital support, and quality of parenting interactions, 66 mothers and fathers were observed individually interacting with their infants during home visits using a standardized observational measure (Nursing Child Assessment Teaching Scale). Parents completed questionnaires on marital support (Dyadic Adjustment Scale) and on childhood experiences in the family of origin (Parental Acceptance-Rejection Questionnaire). For mothers, there was no relationship between childhood experiences and the quality of parenting interactions. For fathers, the relationship varied as a function of marital support. Fathers who perceived less positive childhood experiences but who had more optimal levels of marital support were predicted to have more responsive parenting interactions.

Mother and father interactions over the first year with term and preterm infants.

Mothers and fathers of 54 term infants and 49 preterm infants were observed individually interacting with their infant in the home during a structured task (Nursing Child Assessment Teaching Scale) when the child was 3 and 12 months old. Parents of preterm infants had lower interaction scores than parents of term infants. Differences between the groups were not explained by differences in the behavior of the infant, in levels of stress (measured by the Parenting Stress Index), in marital support (measured by the Dyadic Adjustment Scale), or in level of involvement with their child. Fathers of both term and preterm infants had lower interaction scores than mothers. Parents' interaction scores decreased over time, while the responsiveness and clarity of cues of the infants increased over time. The results are discussed in relationship to other research on prematurity stereotyping and the vulnerable child syndrome.

Play and preschool children with autism.

OBJECTIVES: This research focused on two questions. First, how does the play of children with autism differ from that of normally developing children? Second, what are the relationships between play performance and adaptive abilities? METHOD: Nine children with autism and nine children without dysfunction were matched by mental age, gender, and socioeconomic status. Play performance was determined from videotapes of children playing in their homes. Parents provided information on children's adaptive abilities. RESULTS: The children with autism differed from their peers on the total play score and the participation dimension of the Preschool Play Scale. Communication, as measured by the Vineland Adaptive Behavior Scales, was the adaptive ability most highly associated with play performance of the children with autism. CONCLUSION: The results suggest that deficits in social development are a primary feature of autism. The findings support the use of play to evaluate and develop the interpersonal skills and habits of preschool children with this disorder.

Self-esteem of persons with cerebral palsy: from adolescence to adulthood.

A longitudinal study of self-esteem in 22 adolescents with cerebral palsy is reported. The subjects were matched with nondisabled adolescents by age, sex, IQ, and school. Seven years later, 39 of the 44 subjects (mean age = 22.8 years) completed the Tennessee Self-Concept Scale (Roid & Fitts, 1988), the Social Support Inventory (McCubbin, Patterson, Rossman, & Cooke, 1982), and a demographic questionnaire with some open-ended questions. As adolescents, the girls with cerebral palsy scored significantly lower than the other groups on physical, social, and personal self-esteem; however, as adults, these subjects were no longer significantly different from the other groups. Male subjects with cerebral palsy had self-esteem scores similar to those of the nondisabled groups in both adolescence and adulthood. Demographic information is summarized. The factors that the subjects identified as leading to changes in self-esteem were relationships and experiences. The low self-esteem scores indicate that psychosocial occupational therapy intervention with adolescent girls with cerebral palsy and with some adults with cerebral palsy would be appropriate.